Parkinson’s disease is a movement disorder that requires long-term care as the disease progresses over time. People with advanced Parkinson’s typically require a caregiver (often a family member) to help them with daily activities, such as eating, dressing, bathing and toileting, sleeping, and even moving around the house.

Caregivers tending to loved ones with advanced Parkinson’s need to be equipped for the changes involved as the disease progresses.

Many MyParkinsonsTeam members who serve as caregivers for a loved one with Parkinson’s disease report challenges. One MyParkinsonsTeam member said, “My husband has had Parkinson’s for over 25 years. He is at stage four. For over a month, he has been seeing things that are not there. … We don’t share a room anymore. We haven’t for about three months. The reason is because he has very vivid dreams.”

Another member commented, “I’m caring for my husband. … Each day, there is something new and different to deal with.”

Just as people with advanced Parkinson’s need support, so do caregiver. This article serves as a caregiver’s guide and talks about five ways to support your loved one while also taking care of yourself.​

1. Talk to the Doctor About Adjusting Medication

One way to support your loved one is to help make sure their symptoms are managed as best as they can be with medication. People with advanced Parkinson’s often have the following in common, which may mean it’s time to talk with the doctor about how medication can help.

• They have lived with Parkinson’s for a long time.
• Their medications may have started to wear off, causing tremors and rigidity, or they may move slowly again.
• They may have tardive dyskinesia side effects from Parkinson’s medications. These can include slow, writhing movements of the face, neck, and torso and involuntary jerking of the arms and legs
• They may have various nonmotor symptoms of Parkinson’s, including cognitive difficulties, depression or anxiety, trouble speaking, constipation, hallucinations and delusions, excessive sweating, sleep problems, sexual issues like erectile dysfunction, and an increase in dandruff.

To help manage advanced Parkinson’s symptoms, a neurologist may change the timing or dosage of their medications. They may add other treatments as well. Here are some options the doctor may recommend:

• Cut the dosage or change the timing of levodopa/carbidopa to smooth out the wearing-off effect of the medication.
• Add medications alongside levodopa/carbidopa, such as rasagiline (Azilect) or entacapone (Comtan), which can help the levodopa work better. It may also improve tremors, rigidity, and slow movements.
• Add amantadine (Gocovri) to treat tardive dyskinesia. This medication can work with other Parkinson’s medications.
• Prescribe rivastigmine (Exelon), which is approved by the U.S. Food and Drug Administration (FDA) to treat dementia in people with Parkinson’s.
• Add versacloz (clozapine) to treat psychosis (hallucinations and delusions) that can accompany advanced Parkinson’s.
• Prescribe klonopin (clonazepam) and melatonin to treat sleep disorders associated with advanced Parkinson’s.

2. Look Into Device-Assisted Therapy

In addition to adjusting medication, health care specialists may suggest device-assisted therapy for those with advanced Parkinson’s disease. Device-assisted therapy involves three main treatments:

• Continuous levodopa/carbidopa delivery — This can treat the wearing-off effect of Parkinson’s drugs and tardive dyskinesia. Medication is delivered with a pump where the stomach and small intestine meet.
• Apomorphine (Apokyn) — This medication can treat the symptoms of Parkinson’s that happen during “off” periods of levodopa/carbidopa. This medication is delivered by intramuscular injection (a shot into a muscle) or through a pump device.
• Deep brain stimulation — For this type of surgery — which requires a referral — a neurosurgeon implants an electrode in the brain, which delivers a low-level electrical charge. This charge can help smooth out the advanced symptoms of Parkinson’s.

3. Consider Physical Therapy for Balance and Gait

Despite changing the dosage of existing Parkinson’s medications — or adding new medications — people with advanced Parkinson’s may still have difficulty walking or keeping their balance. For this reason, movement can be a vital part of therapy.

One study showed that exercise and movement training improved balance in people with Parkinson’s. A study in The New England Journal of Medicine found that for people with mild to moderate Parkinson’s, both resistance exercises and tai chi can reduce the risk of falls.

Ask your doctor which exercises might be appropriate for your loved one’s symptoms. Your doctor can also explain how you can best motivate and help your loved one exercise regularly.

4. Know When You’ve Reached Caregiver Fatigue

Parkinson’s caregiver stress is real, and it can go along with taking care of someone with advanced Parkinson’s disease. Caregivers must be able to spot warning signs that they’ve reached caregiver fatigue. These include:

• Neglecting your health and needs
• Sensing isolation and a lack of understanding from others
• Experiencing stress and uncertainty about the future
• Feeling anger at the person with advanced Parkinson’s, then feeling guilty about being upset
• Suffering from deep exhaustion that sleep doesn’t relieve
• Feeling depressed, desperate, or hopeless​

Members of MyParkinsonsTeam often struggle with caregiver’s guilt. “My wife fell yesterday while I was showering, and I couldn’t hear her calls for help,” one member wrote. “Thankfully, she was just bruised. Felt guilty for not being there.”

Another said, “You do what you have to do for their care and your own self-care. One person can’t do it all. Don’t feel guilty.”

Parkinson’s and Relationship Stress

Managing Parkinson’s can add significant strain in relationships, for both the person living with Parkinson’s and their partner, who is often the main caregiver. If you’re worried about Parkinson’s and marriage breakdown, you’re not alone.

“As a person who’s been married for 26 years, with the last four years trying to deal with my husband with this disease and my health issues, just make sure you’re in it for the long haul. It’s a big challenge, be sure you’re educated on this topic,” one MyParkinsonsTeam member shared.

Another wrote, “Hubby is in personal care and I’m living at our home. His Parkinson’s seems to get worse every day. He’s now having delusions of me being with another man and divorcing him.”

Some MyParkinsonsTeam members have turned to marriage counselors for help. Others have suggested taking a break if arguments escalate, which may be a side effect of behavioral changes from Parkinson’s. As a caregiver, it’s critical to take care of yourself and seek support from others to help you take care of your partner.

5. Incorporate Self-Care Into Your Routine

The Parkinson’s Foundation acknowledges that caregivers need to also take care of themselves. Parkinson’s disease caregivers can contact the Parkinson’s Foundation Helpline to find information about local support groups and resources by calling 800-473-4636.

Caregivers can build a self-care plan. Having a plan can help you set aside time to take care of yourself. Remember to include:

• Physical self-care — Getting enough movement and rest
• Emotional self-care — Working with a mental health professional or writing in a journal
• Spiritual self-care — Engaging in prayer, meditation, or gratitude practice
• Sensory self-care — Activating the five senses by focusing on your surroundings
• Intellectual self-care — Stimulating the brain with art, music, or reading
• Adventurous self-care — Trying new activities separate from the daily routine

You are more likely to be able to provide high-quality care for others if you’re taking care of yourself as well.

Talk With Others Who Understand

MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 101,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.

Are you caring for someone with Parkinson’s disease? What do you do to support them and care for yourself? Share your experience in the comments below, or start a conversation by posting on your Activities page.